24 June 2015
PCEHR/HI Discussion Paper Feedback
Department of Health
MDP 1003
GPO Box 9848
CANBERRA ACT 2601
ehealth.legislation@health.gov.au
The Federation of Ethnic Communities’ Councils of Australia (FECCA) is the national peak
body representing Australia’s culturally and linguistically diverse (CALD) communities and
their organisations. FECCA provides advocacy, develops policy and promotes issues on
behalf of its constituency to Government, and the broader community. FECCA supports
multiculturalism, community harmony, social justice and the rejection of all forms of
discrimination and racism so as to build a productive and culturally rich Australian society.
FECCA’s policies are developed around the concepts of empowerment and inclusion and
are formulated with the common good of all Australians in mind.
The Australian Bureau of Statistics reports1 that as at 30 June 2014, 28.1% of Australia’s
estimated resident population was born overseas, that is, 6.6 million people. Over 4 million
of these were born in non-English speaking countries. Cultural and linguistic diversity is
significant aspect of the Australian population, and one of its defining factors. The needs of
this large proportion of the population must be taken into account in the development,
planning and implementation of government programs and services.
Participation
FECCA notes the primary change outlined in the Discussion Paper is to individual’s
participation; that is, the former ‘opt in’ system will be trialled as an ‘opt out’ system. This is
an outcome of the review of the Personally Controlled Electronic Health Record (PCEHR)
System in 2014.
Although FECCA made a submission to the former Department of Health and Ageing in
relation to the PCEHR System in 2011, we did not participate in any consultations as part of
the PCEHR Review in 2014. While FECCA supports the move to the PCEHR system (‘My
Health Record’) in principle, we do not support an ‘opt out’ system, without appropriate
information and education provided to CALD communities.
1
Migration, Australia, 2013-14, Australian Bureau of Statistics 2015
The Discussion Paper notes that the stakeholders who were consulted strongly supported
the move to an opt-out system, so long as it is ‘accompanied by an effective public
awareness and education campaign’.
FECCA would be interested in knowing the intention of the Department in terms of an
effective public awareness and education campaign. Our consultations2 with constituents
have shown that, for instance, the My Aged Care information campaigns (such as ‘Time to
talk about aged care’) have not been effective at reaching the CALD target group. Despite
some limited ethnic radio advertising and print material in different community languages,
almost no CALD person out of over 500 consulted in October-November 2014 had heard of
My Aged Care.
Language is a major barrier to access to information, and to understanding systems and
processes. Providing clearly identified information, online or in print, in community
languages can be one way of making information available to people who are not literate in
English, however agencies must take into account those many individuals who are not
literate in their own language.
Feedback received from FECCA’s consultations also emphasised the importance of having
alternative means of accessing information. Face-to-face interaction, with a trusted person,
or by using an on-site or phone interpreter is the preferred and most effective form of
communication.
Governance
FECCA supports the establishment of a Commonwealth statutory authority, the Australian
Commissioner for Electronic Health.
Privacy and security
Migrants and refugees may have lived in a country where the government systems are not
trustworthy and thus are wary of anything which puts all of their personal information in one
place, in view of privacy concerns. With an ‘opt out’ system, and with the intention to allow
individuals access to set controls for their PCEHR should they wish to do so, it is imperative
that individuals are able to understand how and why this could be done. The reasons for
alerts when certain activities occur in relation to an individual’s PCEHR would need to be
clear.
While the privacy framework of the PCEHR system is described in the Discussion Paper,
there is no information about an individual’s rights should they be concerned about a
notification of someone else accessing their PCEHR.
Conclusion
FECCA appreciates the opportunity to provide feedback. For further information, please
contact the FECCA office on 02 6282 5755 or admin@fecca.org.au.
2
FECCA undertakes annual consultations on equity of access to services and programs for migrants and
refugees, in different States and Territories, and in metro, rural and regional areas.
2